Tuesday, January 20, 2015

Why I don't like CHD Awareness Week

CHD awareness week is coming up February 7th. Everyone in the heart community is getting their ducks in a row. They're buying their heart shirts, they're making their Facebook banners, they're getting their blogposts ready. They're SUPER excited, planning really cool stuff, getting ready.

And I'm over here in the corner, hunkering down in my shirt, just staring into my lap, wishing it to speed on by.


I think that's sort of blasphemy to say in the heart community. 
I hope I don't lose my heart mom card for saying that.

But it's just the truth.


I never used to mind it. Used to love it and get all on board. But not this year. 

Here's why. 

For the first time in my son's life, he's really and truly doing WELL.  Not just doing well in spite of crappy sats or arrhythmias, not doing well even with super blue lips and nail beds. Not doing well even though he can't walk across the room without being out of breath. But, really and truly doing well by all barometers of "doing well."
He's hitting milestones.
We're making plans.
He's living a typical life.
All things we didn't know we'd get to do.

I want to bury my head in the sand and pretend everyone has this outcome. 
I want to look away from the CHD community and pretend it'll always be this way. 
I want to pretend that this ½ a heart, with its crazy new circulation, will last forever. 
I want to ignore the reality that, at 4, this may be the best my son's body will ever be.
Because that's easier.

But then, CHD awareness week comes along and yanks me out of the sand and says "LOOK AT ME! Look at CHD! Look how awful it is! Look what it does to poor, unsuspecting families! Look at the children who don't live to see their first birthdays! Look at the kids who were doing great one day and in the ICU the next. Look at adults who ran out of their "borrowed time!" CHD is awful and no one is ever safe. And you never will be either. Your son's battle with CHD will never be over; he will never be fixed."

And then I have to think about it. 

I think about it every day, anyway. 
That's a part of being in the heart community, of reaching out and providing support to one another. 
And this is where I've been called, so it's where I happily stay. I love my heart community.
But I think about it in small doses each time. 
I have time to absorb each individual loss, the pain, the staggering number of children who lose their battle with CHD. And, somehow, it becomes a tiny bit more manageable that way. But then, CHD awareness week comes along and I have to try and absorb it all at once. 

And it's too much. 

Because CHD is awful. 

Just plain awful.

Kids and adults are taken way too soon.
I can't even breathe when I think of the sweet souls I've known who've lost their battles. 
Travis. Wyatt. Isaac. 
My list goes on and on and on. Those were just the first I knew personally. 
For the ones who are still fighting, far too many days, weeks, months, years are spent in hospitals because of CHD. 

And even when you're not in the thick of it, you're still in it. 
I can't look at a parent at their child's bedside in the hospital without thinking "when will that be me and Bodie again?" Because it will. That's just a fact. 
I can't pretend that I don't sneak into Bodie's bedroom every night, lay my hand on his heart and whisper "Please, God. Please let me keep him. Please. Please." 
CHD robs families of so, so much. 

So yes, I'd like to hide my head in the sand. 
But I can't. 
And I won't. 
Because CHD awareness is too important. 

I will continue to support CHD families, during CHD awareness week, and every other week of the year. And I will lean on them for support when Bodie's journey takes us back to the dark places. 
And I will continue to spout facts like my life depends on it. Because someone's child's might. 
And I will continue to push for funding for more research. 
 Because, with awareness comes funding. With funding comes research. With research comes options. 
And options are what changes EVERYTHING. 

So, this year, during CHD awareness week, you'll see me. 
I wouldn't miss it for the world.


  1. Spot on Amy!! Oh my goodness can I relate to every single word. Sending heart hugs to you all. XO

  2. Absolutely can relate to every word. Even though I push for a proclamation for CHD Week to be celebrated in my town, I feel I am hiding behind the smile knowing all of the little ones and adults who have lost their battle, all of the inpatient heart patients that can't breathe or need assistance from machines, or that Mon and Dad that is making a dreadful decision to stop all support or given the news of their loved ones passing. Yes! I will stand behind the piece of paper declaring the proclamation of CHD week in my town but don't think for a minute that I don't know what I am fighting for with every other Mom, Dad, sister, brother, grandparent, aunt uncle or other support person.